Kabuki Symptoms:  Global developmental delay, vision impairment, dental abnormalities, short stature, intellectual delay, ADHD – Inattentive Type, happy demeanor, loves music

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Andrew's Story:  ANestor and Debbie wanted children and ended up turning to fertility assistance to make it happen. Debbie was already high risk because she was 40 when she got pregnant with Andrew, so she had ultrasounds every two weeks. For the first 6 months, everything went according to plan. At her 6-month appointment, Debbie and Nestor learned that there was excess amniotic fluid. A few weeks later, at 28 weeks, Debbie had a stress test. It was determined then that baby Andrew would not make it to full-term and mom was admitted to the hospital.

 

Andrew was the Kolodij’s first baby, and they quickly learned that he was in charge when he was born at 30 weeks gestation. Thankfully, he was breathing on his own right away! He was, however, jaundiced and struggled with insulin regulation, plus had grade II/III brain hemorrhages. The brain bleeds resolved over time, but Andrew would spend 75 days in the NICU with apnea of prematurity and feeding difficulty. Nestor got the most amazing birthday gift when Andrew was discharged on his 49th birthday!

 

Once Andrew was born, it seemed like everything that happened in life up to that point was moot. Life truly began the day Andrew graced the world with his presence. Debbie said, “We didn’t know what love really was until then. I know all parents say that, and it turns out the cliché is true!”

 

Still, they were unprepared for the challenges that come with having a special needs child. But the Kolodij’s were not going to let that keep them down, they met every challenge and every obstacle head on, as they continue to do today.

 

Around the time when Andrew turned 2, Debbie was doing a mental inventory when she realized her son had been to over 50 doctor’s appointments in his short little life. She decided then that she wouldn’t focus on that anymore. She made a conscious effort to reduce Andrew’s appointments where she could, consolidate appointments and to simply drop a few of them. Over the years doctors have been added and new problems arisen, but the family handled it the way they handle everything: head on and together.

 

Andrew is currently in a mainstream classroom in elementary school. He has an IEP and a 1:1 aide in class. He loves school and learning and is excelling at life right now. He really enjoys being creative by writing his own books, making his own pretend CDs and came up with his own version of football and basketball to play during recess at school. He also really looks forward to GoNoodle videos during indoor recess. (Editor’s note: My KK loves GoNoodle too!)

 

While Andrew enjoys school, there are always difficult times for parents. One time, Andrew was supposed to talk about a “point in time” story. He chose to talk about a doctor’s appointment, which was hard for Debbie to swallow. But to Andrew, it’s all normal and he doesn’t know any different.

 

In order to deal with the daily struggle and the frustration that can come with raising a special needs child, Debbie is thankful for her support system. She and Nestor seek out other special needs families by attending special needs community events and try to get Andrew involved as much as possible. He has played buddy ball, TOPS soccer, a challenger basketball day, he’s done a weekend sleep-away camp, music therapy, karate for kids like him and anything else they can find to keep him involved in the community and grow their support system. The programs described provide opportunities to meet other special needs parents and to learn from each other. Facebook provides another avenue of support for the family, a place to vent frustrations in a safe place with people who understand.